Awarded to Dr Deepak Joshi, King's College Hospital, London
The total grant awarded is £31,561
Duration of award: 6 years (October 2024 to October 2030)
Research title: Pregnancy in PSC

Summary
PSC Support has awarded £31,561 to Dr Joshi and his team to conduct important research into pregnancy in PSC patients.
At the moment it is not understood how pregnancy may affect PSC, although it is thought that pregnancy may have some impact on the disease symptoms and/or progression.
This study will closely monitor PSC patients who become pregnant and gather detailed information from them throughout pregnancy, and beyond, in order to look at the short and medium-term impact of pregnancy on PSC and liver disease.
The new information collected will be analysed to understand better how pregnancy may affect patients with PSC, and lead to better management of symptoms and appropriate monitoring during pregnancy.
What will Dr Joshi do?
Dr Joshi’s team will collect information on PSC patients who become pregnant, and compare this with a control group of PSC patients of child-bearing age (the PSC control group), as well as a group of patients who have a different type of auto-immune liver disease, called auto-immune hepatitis (“AIH”). AIH can cause liver complications and scarring, but does not damage the bile ducts like PSC does.
Information will be collected from PSC patients at the earliest opportunity after they first find out they are pregnant, including their medical history, blood tests, questionnaires on quality of life and symptoms and information from the pregnancy scans. Further information will be collected in each trimester, 6 months after childbirth, and every year afterwards.
The same information will also be collected from AIH patients and the PSC control group at the start of the study and annually thereafter.
By comparing the medical history of patients with AIH, who do not have bile duct damage seen in PSC, this study will help understand which findings may be specific to PSC rather than liver disease generally.
Early results of this project will be shared by the research team with PSC patients at different stages of the project (not waiting for the whole project to be finished) and with medical professionals, in order to influence and improve care for PSC patients who are considering pregnancy and/or who become pregnant.
Why is this study important?
Although PSC is commonly diagnosed in women at an age when they may become pregnant in the future, very little is known about what happens to their PSC during pregnancy, and how pregnancy affects the progression of their disease.
A survey conducted by PSC Support members found that only 23% of patients received information about PSC and pregnancy before they were pregnant, and 46% did not receive any specific information at all. Patient feedback also suggested some patients found the care they did receive in pregnancy to be confusing or inadequate.
At the moment doctors do not have sufficient scientific knowledge on PSC and pregnancy. The information currently available is limited to looking back at the notes of women with PSC who have been pregnant at a few specialist liver hospitals.
This project will address an urgent need for better care for people with PSC planning and having families.
The information collected will be analysed and used to assess how effective treatments are for worsening liver symptoms during pregnancy, and provide valuable information on the effect of pregnancy on PSC. This will in the future be used to improve the standard of care for PSC patients.

"With the grant from PSC support I am aiming to understand the impact of pregnancy on patients with PSC. This is important because we can then support our patients pre, during and after their pregnancy. There is not a lot of data on this topic but is clearly a very important topic for our patients. “
- Dr Deepak Joshi
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